God bless
When first I began to be ill, it never occurred to me that I would be treated any different than anyone else. It was hard to fathom the discrimination, open hostility, negativity, and meanness I would encounter in my efforts to stay alive and return to work. Nor was I aware, that my Civil Rights would be abridged at every turn. It seems if you are disabled in this country, there are folks in power who will do their best to make certain you never have a voice. This page is just a little of what I and others with disabilities have seen and experienced. Warning: It's not pleasant!!!! BUT it's true!!!!
I never wanted to have to go public with my own struggles. I tend to be a rather private person. Still, if it will make even one person dealing with a similar situation feel less alone,or perhaps change a persons perception of others, then it's worth it. I want those of you reading this who are disabled to know that you can tell your story. It is important that you are heard on these issues. NO one has a right to deny you your rights .
1. Discrimination in housing. Countless times when we attempted to rent a home we were told point blank "WE don't rent to Section 8 "(a public rental subsidy). The assumption and judgment of this attitude is heartless. They never say "People like you",as if folks who have to use this must be unwashed masses who don't deserve decent, safe housing. Before we found a good landlord who treated us like human beings, we rented from landlords who were not concerned about health and safety regulations. EXAMPLE: my son missed being killed by a falling piece of plaster at a building that "appeared" to be safe. Landlord refused to take responsibility for it and retaliated when I tried to have it addressed. The next time we rented what appeared to be a wonderful house from a nice landlord. My son and I were both very ill till we moved out. Apparently water leaked through walls and the house was infested with mold (which we are extremely allergic to). After moving, my EBV (EPSTEIN BARR VIRUS) titers dropped 600 points and we began to improve. There's more detail to this, but it's too long for here at this moment.
In both cases the houses we lived in severely affected my already compromised health and my sons severe allergies. We are very fortunate now to have found a decent and safe place to live. There are not many places like this out there. My landlords now are like family. Decent caring folks who know that all I want is to be able to work, buy this place and help others.
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SO many people who are disabled are living in sub-standard housing! Many times the very places they live exacerbate their already compromised health!!!! Is this right that folks should have to fight for safe and affordable housing? Should people be allowed to live in unsafe housing? Isn't that counterproductive and costly? A certain Congressional Rep.(former Senator) of NC owns rental housing in this county. It is all substandard. Of course it is not in his name. Yet he builds a huge house for himself.(over 25,000 square feet. Nor does this certain Congressman answer emails from disabled voters) No wonder folks do not trust their elected officials. VOTE because only by voting will your voice be heard.
An aside: In return for my (current) landlords kindness, I have done improvements as I have been able to. The place looks far better than when we found it. When we move (if ever, I am trying to buy this place). There will be nine new flower beds with perennials, a grape vine, roses, moisture and erosion controls using plants and landscaping, shelves, and new paint. These are all things I have done since moving here because I like to contribute and make a house a home like any other normal person! I have gone against doctors orders to do this because I feel that everyone must try to contribute something according to their abilities! So much for the myth that the disabled and poor are useless and lazy. Certainly belies the myth that all folks on public assistance are low-lifes and tear up property. I ended a long remission by committing myself to improving our lives. Now this year (1998) I have to pace myself carefully and not overdo .Some of the dreams are on hold for now, but at least I am vertical (some days) and alive. I advise any of you who are fighting for your rights to never give up despite setbacks. The struggle may seem intractable, but it is worth it . The alternative is to give up and for me that is just not an option. I have taught my kids not to allow others to diminish their worth because we are economically challenged. They are blessed gifts from God and I refuse to allow their self -esteem to be damaged by predjudice and class-conciousness.
2. Friends who turn away because you are no longer in their social class! Churches that turn there back on you because you can no longer attend services . While I am a Christain ,I dislike organized religion. My children attend a church with friends. Still, my daughter often comes home complaining that she has been laughed at because of her clothes. her clothes are nice. maybe not the newest , most fashionable, but clean and well kept. Senseless the way that folks put their predjudices on children.It limits them and is so unfair. And belies what Christianity should be about. WE are not here to judge others.
3. Doctors who assume you must be ignorant when you are on medicaid/disability. If you are poor , you must be uneducated and incapable of making decisions for yourself. They make decisions for you that are diametrically opposed to your healing. Say things like "WE KNOW WHAT's BEST FOR YOU" actual quote from doc who gave me wrong anesthesia. This act ended up by causing me to undergo further major surgery seven months later. It would take a book to talk about some doctors and the way most of them treat low-income and disabled patients! To this day I still have repercussions from this disregard for my request for General Anesthesia!!!
After years of dealing with inconsiderate docs,I have found three who are the bestI have ever encountered. They listen to what I say ,read the current research I bring them, do not patronize and are kind and compassionate people. God bless DR's James SHAW,Dr. Donald RUSSELL andDr. Terrence Lee. I feel lucky to have them on my health care team*S* In Memoriam: DR.Terrence Lee Passed away recently. With him goes the best medical care for those disabled with CFIDS/Fibro. We will miss him. A very open-minded kind soul he was.
A new Doctor is in Asheville doing rehab medicine for Fibro, Post polio and MS and possibly CFIDS. His focus is giving people back their lives. He knows the various theories well and offers an individualized plan towards Rehab. Call Dr. Terry White (listed in phone book of Asheville,NC or information) I will post his number soon.
4. Being shunned in a community because you are "low-income and or disabled."It happens folks.Their is a class system in America .Don't let anyone tell ya different.Ask any disabled or economically challenged person.
5. Having a disorder that is not visible many folks will tell you: "YOU DON'T LOOK DISABLED" actual quote from some idiot. More on stupid remarks folks make later. And it should be noted that CFIDS/Fibromyalgia affects each person differently. one should never judge another . "There but for the grace of God"
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6. Social isolation (how can you get out and meet folks when you are busy caring for your health and trying to stay well. Holidays are the worse. I would rather have the prescence of others in my life than any present. I would love to be able to get out and volunteer in the community. If you know a single parent with or without a disability, offer to babysit for them occassionally. Believe me they will appreciate it. Everyone needs a break at times.
7. The school where your children goes assumes you must be a bad parent because you cannot go to school functions and can no longer dress like a middle class person. When presented with a child who has special needs , they choose to ignore it if the parent is not either rich or an important person in the community. They refused testing for my daughter when told she had ADHD and other probs.(5/96) I am fighting this. The very patronizing School Superintendent had the gaul to tell me, and I quote:" WE know what's best for your child" (this seems to be a common phrase around here). The vice principal said: "OH , She's pretty she needn't worry about academics" I wanted to wring his neck! Others in this county are having the same problem. Here you must fight for even the right to have an opinion. Is this not America Land of the FREE? Doesn't every child deserve and equal education despite their disabilites. They have committed so many illegal acts out of arrogance it is not even funny. The two things I no longer have any tolerance for are patronizing and condescending people.
<2/6/98 Much more on the battle with the School system soon. WE now have documentation and proof that they are discriminating against not only low-income parents, but any parent who is assertive and tries to help their special needs child. This material rests with an attorney to protect me from backlash and threats. AS a Christian, I am appalled at the way folks are treated here.
2/19/98 As of today we have found out the school has not been telling me the truth about Emily's performance and hiding her files from me. They also were supposed to tell me when they were doing testing and they did not. Her science teacher has just called to inform me that she hid her mid-terms and detention slip from me. I am meeting him tomorrow and discussing the problems. More on this ridiculous school system as the story unfolds
3/24/98 Today there is a meeting with the school folks to discuss plans for my daughters special education needs. I hate these meetings , as the school people never take into account other evaluations as they are required to by law nor do they listen to the parents. Today we will take Emily and another friend as an advocate and hopefully they will do what is required.
4/22/98 after weeks of meeting with school care team (three hour meetings each time) I was called to attend a meeting ,They are supposed to notify me in writing but not this time. And now they are claiming that papers that we signed at the meeting are lost and they don;t know where files are. I am filing a FERPA complaint against them and a civil rights discrimination complaint against them. July 28, 1998I am pleased to say that after several years, many who caused parents probs in the county were asked to resign. We have sincere hopes that those coming to fill their posistions will be honest and fair people and give these kids the help they need.
Sept. 20th, 1998 Sunday am. On Friday I had called the elementary school to ask to view my sons records before a meeting to discuss the evaluation proving my son is academically gifted. When I got to the school, the receptionist told me that the records had been handed over to the teacher. No apology, no I am sorry, no nothing. Then when I entered the room the teacher and another secretary were viewing the records and whispering , then the receptionist took away a certain portion of the file. I made no mention of this at the meeting . I am adressing this by giving all the info to a Civil Rights attorney. refusing to give parents all of a childs school records is illegal. However, in this school system , legalities are tossed aside in favor of manipulation and power trips. All any of us as parents want is honesty and respect and for our children to have what they need. I have not weathered this battle well. It has impacted my health and when I am tired and in a great deal of pain, it is difficult to be patient and diplomatic. I should not have to fight to make certain educational law is respected. I am looking forward to seeing how the new supt and special ed. director handle things. We have heard good things about them .
Seems it's business as usual with the school system lately(9/30/98) a good friend with a very disabled child is struggling to get her son's IEP accomodations met and to assure that the school system adheres to the law. It would appear that this school system thinks they can write off kids with disabilites. Please urge anyone you know who is an attorney to do pro bono work for those of us who have to fight the system everyday. The struggle to get them to respect educational law has severely diminished my health. I am so far into relapse now and the cause according to my doctors is the stress that this battle places on me. It makes no sense. If I broke a law, I would be arrested. Yet, this school system ignores the law and seems to do whatever they can to take away the rights of parents and kids. I am now preparing a Civil rights complaint as I still have not seen my childrens school records. They have even lost records I handed them . Funny isn't it? If I were rich or well known around here ,I bet they wouldn;t be so ready with the lies and BS we have had to endure. Lets' hope the new Supt. gets with the program. Too many in this county have grounds for major lawsuits. Isn't that such a waste of energy when just helping these kids is what we are after.arggggggggggggggggggggggg Dear God will it never end. I wonder how these folks can sleep at night. They attend church , and claim to be Christians. But what is Christain about the way they treat kids and parents in this county???
10/11/98 On Thursday the Reprsentative for the western area of our state came to have a meeting with me to view the files at the HS. Guess what?? They padded files . Things they ostensibily labeled as two years old were not there two even three weeks ago. I took all of my files and many things that should be in daughters records are not even there. Records of my contacts with school (where I was misquoted BTW) , records they should have shown me long ago. Even a private coversation (where I was misquoted yet again) was in the files. They are such liars and cheats. I knew if I threatened them with a FERPA complaint they would scramble to get the records together. Makes me wonder now what records they are still hiding. sigh......... I have made a letter detailing what I think will happen once I file the lawsuit, they will try to discredit me as a mother. It has been doen to other parents in this community before when they had the school caught in an illegal act. So let it be known here that if I am investigated for false allegations about my parenting, it will be coming from those who think they can intimidate me. And for those in this county (you know who you are) who assume I will back down or quit trying to expose your wrongdoing, I will not back down!!!!!!!!!!! I have recieved a visit today from a woman with a child who has Spina Bifida. This woman has been denied accesss to therapies for her daughter by the school. If children with severe disabilities cannot get help here, can you imagine how hard it is for those of us who children have invisible disabilites?? Daunting to say the least. We now have my daughters evaluation in hand. She is disturbed to say the least. On Wednesday I shall be presenting this eval to school officials . I am almost certain they will try to avoid helping her. I will post again on Wednesday night about this past weeks meeting and the one coming up. Look for a new file to be created for parents to complain about their school systems.
Oct 14,1998 Another meeting to discuss my daughters possible change of placement from 504 accomodation plan to an IEP(individualized Education Plan) The school does not want her to have a right to an IEP because then I will be afforded certain rights and protections. They also did their best at this meeting to dismiss any concerns I had for my daughgter,. Even after hearing her physch eval, they still could only say that she is "pretty" and a "good girl".One teacher got very defensive when i mentioned that the 504 was not being followed. All were patronizing in manner and tone. Nothing was decided with me asking the meeting to stop since I was very tired and hardly could compete against eight other women. I have called the SUPT of Schools and The Special Ed Director to ask for a private meeting. I also asked for a complete coppy of all of Emily's records and to be sent anything added to her files. They tried to even discredit Dr. Slaughter by saying she hadn't done observations at the school. Sheila never spoke up once to defend my concerns and neither did Patty for that matter. I have basically decided to just pass all this info on to the ACLU and the MEDIA> I cannot fight these people alone. They still did not have any of the other tapes from previous meetings in her file. Nor did they have many of the papers and letters I sent or gave to school. Not even the letter from the Asst. Attorney general of EDUCATION in our state. If they can ignore his request that they do their best to help, how can I hope they will listen to me. This is patent discrimination on the part of the school. They are denying my daughters documented problems and refusing her services. As I mentioned before, my family is not the only one in this county experiencing these problems. If they will not help a child with Spina Bifida, why would they help my daughter, whose problems are basically invisible. The school has clearly stated by implied action that they do not care what happens to children with disabilites. Does this mean too, that they believe as Hitler did that they Disabled should be erradicated?? Let's hope and pray not. More to come as the story unfold on this travesty in education in NC.
Living on disability is a bit like living in a fishbowl. When you have to accept public assistance every aspect of your life is scrutinized. For someone who values their privacy this is devastating. If you are disabled and a parent of a child with special needs, your ability to parent is even called into question by those who attempt to play God. I have recently heard a story of a woman whose child was taken for six weeks just because she is physically handicapped..The link to Kalis page is on main page.
Most folks that I know who are on disability only want their lives back. Don't believe what the media tells you. Only about twenty -five percent of folks on public assistance are taking advantage and abusing the system . The rest of us are struggling to get off of it. I despise being on disability and will try till the sun don't shine to have a normal life again. I am telling you this because I know for a fact that these things, and many worse things are happening to folks like me! This file could actually be a 10 mb and it would not be room enough to document the waste of government money by administrators and abuse of clients by the people charged with helping them. If anyone knows of grants available for disabled folks to start businesses please let me know.
This is only the tip of the iceberg and soon the full story will be on this page It will shock you. I do not want sympathy!!!!!!!!!! Only to raise awareness of what folks with disabilities struggle with Just contemplate what it must be like for others with disabilities. The only reason my story is here, is to educate folks on what the media doesn't tell you about life with a disability. And hopefully, to encourage others to fight for their rights.
And for those of you who are disabled, I hope by putting my story out there, it will give you the courage to come forward and allow the struggle you are dealing with to be documented. It is time the truth was told!!!!!! This is the very abbreviated and short list of some of the things I have experienced. I am fighting this and have started growing houseplants, organic veggies (in season) (A small endeavor) and writing in hopes I will soon be able to get off of disability and move ahead. These are all things my doctor does not want me to do, yet I must try to change my life. After being a working person for over half my life all I want is to be well and independent again so that I may help others and never again have to ask for any kind of help for my self or my family. And, never have to deal with the bureaucracy again!
May I add here that it isn't the material things of life I miss since the onset of CFIDS/Fibro.It is the friends who have turned away, the folks who callously judge my life without even knowing me and my lack of good health that bother me the most. However, I refuse to allow this to stop me from trying to change the status quo! Were it not for my online friends and a few good friends here in my small town, I don't know if I would have ever had the courage to talk about this. Thanks to those who have come to know that my humanity, intelligence and worth is not affected by my physical limitations nor my income!
In Princeton, Indiana recently, a Vietnam Veteran was thrown out of a city council meeting for trying to speak about handicap parking issues and the towns non-compliance with the Americans with Disabilities Act. He was given two minutes to speak and when he requested more time they ejected him!!!This fight continues as of 3/20/98 and I will know soon whether it has gone to court.Our own town in not handicapped accessible and there have been fights to have the sidewalks ramped.
A friend in Princeton writes that she too has had many callous and cruel things said to her since she has become disabled with Rheumatoid Arthritis. CK is a dear friend .I ask you to pray for her.The list of cruel and stupid things folks with disabilities have heard will eventually become it's own file.
In the same town a woman using a guide dog was removed from a sports event. The reason, NO GUIDE DOGS allowed!
In our small town , a woman whose daughter has Spina Bifida was refused services for her daughter. These services could help this child to become more productive later in life. Would the school system rather she stay dependent. It is unforgivable that she should have to even fight for these legally mandated services.
Over and over I am hearing that people who are disabled are experiencing discrimination on many levels. Apparently Princeton Indiana has not heard about The Americans with Disabilities Act! Please refer to Mary Ann's page for the text of this Act.
As I find more folks whose troubles seem intractable, I will ask for help for them here. If you are having a hard time and need help write me and I will post your needs here. Your name does not have to be used
God bless all who struggle.I pray their needs will be met.
Thanks for staying the course and reading this page. Fight for the rights of all people!Stand up for free speech. Oppose genocide. Support rehablitation and equal and free education.
All graphics on this page are courtesy of JInger Dixon. JINGER DIXONS WORK
